“Me, She, and Autism”, by Cameron Toner
I am an autistic parent, yes I get a label too,
All because my daughter, is not like me and you,
We used to get some funny looks as we were finding out,
What this thing called autism was really all about.
At two years old the screams would start for things that weren’t right,
The train that made the choo, choo sound with the dreaded flashing light.
At three years old we let her loose with other kids her age,
And realised it wouldn’t work when they witnessed her green rage.
Four years old was much the same, a phone call every day,
“Can you please pick up your daughter as she doesn’t know how to play.”
Then school loomed, the uniform, why wasn’t it bright red?
And the challenge of the early start, “I’m not getting out my bed!”
Uniform, half on, half off, the tie is in the bin,
I help to put her shoes on, with a kick to my left shin.
I limp away and struggle just to really understand,
Why this thing called autism was dealt into my hand.
It sounds so easy when you’re on the outside looking in,
No rest for the wicked, no relaxing glass of gin.
It is constant, constant, constant, did I say it doesn’t stop?
And all the while I feel like a persistent, parental flop.
First day at school and we are ready for an exciting new chapter,
How will the teachers cope with my wee sweet velociraptor?
Baby steps – gently, gently, don’t upset her mood,
You really don’t want to change her from that nice angelic good.
All day long I pace the floor, all I can do is worry,
I just wish this first day would be over in a hurry!
I have put my trust in others that I really do not know,
I hope this isn’t just another terror tale of woe.
First day over, all went well, a dad full of relief,
She looks the same, no harm done, in others I have belief.
Short lived it is, on school day two, someone moved her chair,
The dreaded melt down, screams and shouts, and fist-fulls of their hair.
The school routine, it starts to show, its foreboding ugly head,
“I’m not going back there”, is the cry from my daughter’s bed.
The teachers they are lead-foot, they don’t appear to understand,
My faith is slowly slipping, this is not how it was planned.
The dreaded diary, my only clue, to how her day has went,
Negativity, struggling strides, is the norm of what is sent.
Relations with heads of staff then start to take a dip,
I feel that we are all aboard a shambolic sinking ship.
Itchy clothes, sounds I don’t hear, confusion rules supreme,
A day without disaster, oh I can only dream.
Feelings that I never had now dance inside my head,
And yes, they magnify themselves when I go to bed.
We stand there jaw dropped, double glare,
Four look lost eyes, that no hope stare,
Looking for someone to care,
Is there anyone out there?
Our struggling ship rocks back and forth, but somehow stays afloat,
We bail out negativity, and start to strengthen our boat.
We won’t go down without a fight, and we will not abort,
A flashing lighthouse in the distance, offering support.
This shining light has raised its head, and given us support,
It stops the ship from sinking, and guides us to safe port.
They challenge archaic thinking, and drag it from deep water,
Information, guidance, help, to support me and my daughter.
An H, an O, a P and E, they are that shining light,
They stand beside me all the way, to help us in our fight.
They have the knowledge, the people skills, to ensure no isolation,
They show the world that autism does not mean discrimination.
Helping break the barriers that society puts in place,
Offering a place to talk, to a friendly face.
Providing information at a welcoming safe base,
Encouraging one ideal that we can all embrace.
So together we make a pact, and begin to comprehend,
That our life is not a sentence, and is certainly not the end.
Yes, we are all different, our life is individual,
We have our set routines now, and the odd wee crazy ritual.
So now begins the fight back, I feel like Obi Wan,
Miss Skywalker at my righthand side, saying we really can.
The force feels strong, the Jedi, yes this darkness we will end,
Yoda, Solo, Chewbacca, the dark side we will mend.
Now we do things together, things that we both like,
We read a lot, watch wildlife, and sometimes ride our bike.
We have our space to be alone, but in each other we still depend,
My beautiful wee velociraptor, and my bestest friend.
I still struggle with this autism, and at times I feel alone,
But this time it is different, I have speed dial on my phone.
One finger touch on to my screen is all I have to do,
To get a friendly voice from the HOPE for autism crew.
Yes I am an autistic parent, but please don’t label me,
I have courage, I have HOPE, and what will be, will be.
But one thing to remember, as we move to our next chapter,
I am very proud parent of my growing velociraptor.
Cameron Tonner is a parent member of HOPE who kindly let us read out his poem “Me, She, and Autism” at our 2018 AGM. We’re very grateful for his willingness to share his story and we’re delighted to be able to share his work!